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Saturday, June 19, 2010

Not all days are good days....

It's always easier to write a blog entry when all we have to tell about are miraculous changes or progress. Today is not one of those days. We know, understand and accept that there are good days and bad days. We know that there are challenges ahead that will be very difficult to deal with and we know that only the Lord will have all the answers. We just need to stay focused, ask and then listen.

Yesterday Shannon seemed extra tired. She started being a bit more defiant when we wanted her to eat. Then this morning (well at this time of night I guess it was yesterday morning) she just did not want to wake up, telling me she was still so tired. Before it had helped to get her showered so we headed to the shower. She was awake and somewhat perky in the shower. Right after, we went straight to OT. She worked maybe 10 minutes before she just put her head down and said she was too tired. Generally, even though she doesn't want to work, we can convince to make it through the session--not today. We went back to her room and she slept--soundly. The doctors had a blood test done and found that she was at 22--normal is 30 and 18 is not good at all! So it could have been part of the problem. After discussing what was going on the decision was made to give her a couple of units of blood. That took up the majority of the day and we still aren't seeing the consistent perky Shannon we have been used to. We talked with Aaron (our doctor son :))and walked through the situation. We thought that perhaps the medications that they had been given her were possibly causing her to be so tired and sleepy. It could be, but since Thursday mid day she hadn't had any Lortab or Toradol, only some Tylenol and one dose of Motrin before bed. It is true that it takes a long time for some drugs to get out of Shannon's system. So perhaps that is still part of the issue. And the third possible reason for the tiredness may be sadness. Shannon is becoming ever more aware of her situation and what it really means. Her short hair has never really bothered her until today. Because she has been so tired, we have had a very difficult time getting her to eat much--not just because she is tired but because she refuses. She still drinks well but not as much and most foods, she just won't even try. So the big question is, is the problem low blood, medication, sadness or a combination of all 3. I think I would have to say a combination. Shannon has had a few visitors and she generally perks up well for them. It has been good for her. We do schedule visitors because she can not have too many and they can't stay for very long. Whenever someone leaves, they are so amazed at how good Shannon looks and how well she does interact with them. We see her every day and so don't realize what others may think of Shannon's current condition. She looks good, she knows people and she can carry on a conversation very well. We do know that when people leave, they feel uplifted and inspired because of what they have experienced with Shannon. We do know that family and friends are important to her. We have read and reread every letter, card, poster, email, blog comment that we have received for her numerous times. She loves to hear from others. I must say though the clouds are not all dark. Shannon did eat for the speech therapist today and passed into another level of foods. She is now at the advanced mechanical soft foods. Wow, does that open up the options for her! She ate french fries today and pieces of chicken nuggets. She only ate 1/2 her fries and maybe 1/8 of the nuggets but she was thrilled to have them when she started eating! I hope the variety will help to improve her appetite. I spent 30 minutes or so with the dietitian today learning ways to boost the calories in the things that Shan does eat. It's going to take more time than we wanted before the feeding tube comes out but patience is a virtue that we are working on here! :) We know things are going to be tough on Shan emotionally and ask that you would pray for her to receive the divine help that will sustain her. Pheobe

6 comments:

Shannon,Your story has been so inspirational to me. Whenever I feel like something is too difficult for me or I don't want to do something, I think of you and you give me the strength to push myself and to succeed. I am getting my wisdom teeth out on the 24th and I am really scared, but I just keep thinking about you and your perseverance and strength and I am not afraid. I can't imagine how difficult this is for you, but I know that God will give you the tools you need to continue on your journey and your recovery. I will continue to pray for you and your family because your dedication persistence has always been inspiring to me, even before this bump in the road. Your presence in my life has always been a miracle to me, and hopefully I will be able to visit you soon. Keep fighting girly!!!Clara PurkWest High Debater

I admit I don't know the beautiful, grown-up, high school aged Shannon that you all know and love.

I only know the adorable, spunky, 6-year-old Shannon. The one who flew around the house wearing a pink cape, the one who loved to sit in my lap for stories, the one who absolutely adored her doll "Cheyanne", the one who gave amazing hugs, the one who could do anything she set her mind to. The one who didn't want to practice piano EVER. The one who hated to eat her dinner unless I fed her each and every bite (unless it was chicken nuggest and french fries. She ALWAYS ate those!)

To that little Shannon, whom I still love, and who I'm sure is still in there somewhere. I am sending a great big hug. Even on these "bad days" I am still so proud of you and the beautiful young woman you have become. Not a day goes by that I don't think of you and feel proud that I know you, even if it was just the six-year-old version of you.

You know, when you were six you promised me that someday you would babysit my kids. Well, I finally have kids and I have a good mind to hold you to that promise!

Dear Shannon, Here I am, stuck at the airport. I just was sitting next to a guy that all my debaters thought was "hot." They are all hoping I would get his number for them. I'm so sorry that you had a bad day. I wish I was there to rub your feet and try on wacky socks and hats. Soon, you will be able to go cheap shopping with me at Rue 21 and Forever 21. I can't wait!Katiemarie (you remember her, right, one of my debaters) wanted me to tell you about my strange dream the other night. I had had some sugar right before bed, and you know I just shouldn't have sugar because I end up walking in my sleep or talking in my sleep. So, I have a dream that Katiemarie is cutting my hotel room out of the hotel and putting it on a truck just to bug me. I woke up when my roommate, Irene, says, "Cindy, what are you doing?" I found myself standing at the window and I woke her up when I said, "Oh no, she isn't doing that!" Yes, sugar confuses me. Aren't dreams weird sometimes? Yes, and even though that happened, I still couldn't help myself and I had some cheesecake from the cheesecake factory on our last night here in Kansas City.

Keep on eating, Miss Shannon! I'd love to bring you a piece of cheesecake when you are allowed. One of my debaters had Godiva Chocolate cheesecake--mmmmmmm.

I will be back soon and would love to visit when you are allowed visitors! I'll do my best to make you laugh, my dear friend :) (Do I need to bring a red nose and clown wig?)

Oh Shannon :)You're so stinkin adorable! Chicken nuggets taste awful..haha I can't imagine getting that as a 'treat.' yuck!And all that stuff that Cindy said is so true! She is so silly. Nationals here has been pretty fun. and she has gone sugar happy =) and it is not good for her at all! Poor Nikko... when she gets home he will have to deal with her going through sugar withdrawals!!!And remember Lexi Pasi? Today she has been making fun of me because apparently I am were all of the blonde stereotypes come from. I was so angry at her! If only I had you, another blondie, to be here to back me up ;)Shannon Shannon you're so awesome.And I hope you start eating soon and get better haha cuz I still need your help with debate ;) I'm not going to be able to do policy next year ... sadly... but I am going to do progressive LD, and I need your help to get up to par with the speed! Cameron has been helping me a little with argumentation and stuff. But sometimes he's kinda complicated, but I usually end up understanding it. I just have to think really hard! :P lol. He's so sweet though! Oh and he wrote the sweetest poem about you. It's on facebook. If you ever have the chance you must read it. When I read it I almost started crying. It's absolutely beautiful.

I hope you get lots of sleep and it's not hard to sleep away from your bed at home ... I'm sure your used to it by now though!I know I still wasn't used to it after being here in Kansas City for a week! and it was so funny though. There was so many bed/sleeping issues this debate trip. I am sure you have had plenty of those. Someone else taking up all of the bed ;)

Oh Shannon never ever tell yourself that it can't get any worse then this though! Because the other day I was having such a bad day... and then I was waiting for the bus to get back to my brothers and I thought "I guess it can't get worse then this." Then it started raining! While I was waiting! It was like in one of those cartoons. Haha. Now that I look back on it though I think it was Heavenly Father =)Cuz once it started raining I was basically just about to start crying... and then I just felt this comfort all around me. I guess it was his way of showing me he still cared ;)

Well now that I have basically written you a novel.... Anyways I love you to death and am gonna keep on a prayin for you, you adorable little girl :)

Not all days are great days for any of us but Shan, you are in a very important time in recovery where you need all the nutrients you can get. I just may have to come up there and force some delicious food into your mouth.....you know I will too!

Shanni, How did we ever make it through Girls Camp 2010 without you being there? Well, you will see soon what made it easier for all of us! YOU did make it fun!I have missed you a lot lately and today found out that I need to schedule a time to come visit, not wait to be invited! YEAH! I am working with your Mom so that I can come and see you this week. I have a bunch of stuff that I have gathered together to bring to you. I think you will like what I have! I even made you something special. It will make my week to be able to come see you and your Mom.Tonya and I spent some great time together alone at GC and WoW, does she love you! It was amazing to be with her without all of the other girls around. I will fill you in this week.Well Shanni, dear Shanni, I am tired (as I see you have been lately!) so I am off to beddy bye. I love you dear one, and can't wait to see you this week.Thinking of you tonight,Soo

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We Believe in Miracles!

“One’s life … cannot be both faith-filled and stress-free…Therefore, how can you and I really expect to glide naively through life, as if to say, ‘Lord, give me experience, but not grief, not sorrow, not pain, not opposition, not betrayal, and certainly not to be forsaken. Keep from me, Lord, all those experiences which made Thee what Thou art! Then let me come and dwell with Thee and fully share Thy joy!’ …Real faith … is required to endure this necessary but painful developmental process.”